Super long speech appointment

A long time ago (it sometimes seems to us), long appointments were the norm. I’m not just talking about a mere two or three hours; in the days of Namine’s infancy, it was typical to spend literally six to eight hours at the hospital.

Those days, for the most part, are thankfully behind us. We do, however, still have the occasional crazy long clinic appointment. Yesterday, for example, was one.

Namine had a six-hour appointment with several doctors to discuss the state of her jaw, and what the future might hold for her — including potential surgeries.

Before I continue, let me give you a little background. Namine was born with Pierre Robin Sequence (PRS), which is not a single condition (although it is often misclassified as such), but rather, as its name implies, a sequence of events which occur in the womb, resulting in several defining characteristics.

The foremost trait is called micrognathia, which is a regressed jaw. When Namine was born, her lower jaw was so far back that it cut off her airway, requiring her to get a tracheostomy. Thanks to a surgical procedure called a mandibular distraction, her lower jaw was able to be brought forward enough to open her airway. With her airway open enough, Namine could breathe on her own, and eventually was able to get rid of the trach tube.

Another common trait of PRS is a cleft palate, often U-shaped and only affecting the soft palate. Namine had this, and had surgery in 2010 to close her palate. This was crucial in getting her to the point where she could eat on her own, and not depend on a feeding tube.

The third trait of PRS is ankyloglossia, which means being tongue-tied. Namine’s frenulum (the webbing which connects the tongue to the floor of the mouth) was partially clipped in 2013 to allow her better speech.

Whew! That’s a lot. And as far as speech goes, all of this has allowed Namine to speak clearly — in fact, she just gave her first speech just the other day. But unfortunately, she’s not done because she’s still growing. Her lower jaw has been moved forward, thanks to the distraction, but both her upper and lower jaws are still small.

In itself, a small jaw isn’t a problem. The problem comes into play when the baby teeth fall out and the adult teeth come in. There’s simply not enough room for the adult teeth. So the last time we discussed our options with the orthodontist, two options were presented (and as we have now discovered, presented badly): tooth removal, or palate expansion.

Tooth removal is a bad idea

Tooth removal is exactly what it sounds like. Namine would have one or more teeth removed, as necessary, in order to make room for all the adult teeth coming in. At first blush, this doesn’t sound so bad. And last time this was discussed, it was suggested as a sound procedure. What wasn’t discussed, though, was the fact that Namine is a PRS kid.

She’s already had work done on her jaw due to the distraction — bone has been drilled through, and that can compromise bone strength and density. The last thing her doctors should want is to further compromise the strength of her jaw, and removing teeth would do just that. Removing teeth is only a last resort option, especially for kids like Namine who have had previous surgical work done on their jaws.

Palate expansion sounds scary

When the palate expansion was described to us the first time, the doctor likened it to the jaw distraction. To us, that meant drilling through bone. (We’d like to avoid that, if we can.) The doctor explained that the expansion hardware, once in the mouth, has a screw in the middle. This screw needs to be cranked — again, just like we had to do for Namine’s distractors — and this, in turn, expands her jaw. It’s called a “palate expansion,” but the point is really to expand the jaw to make room for all her adult teeth.

As it turns out, this was explained poorly. Jessica, in discussing this with the orthodontist yesterday (a different orthodontist, in case you’re wondering), discovered that the “installation” of this hardware (you can probably imagine me doing sarcastic finger-quotes at this point) does not involve embedding anything into flesh or bone. (Cue us wiping our collective foreheads in relief.)

No, the installation mentioned above is accomplished by securing metal rings around Namine’s molars, similar to the Omega Loops she had put in for her palatal lift prosthesis. Attached to these metal rings is the hardware which sits on the roof of her mouth, at the center of which is what’s referred to as a screw. It doesn’t screw into the roof of her mouth, though (which was not explained last time). The screw is turned every so often — that’s our job — and in turn (pardon the pun), Namine’s jaw is widened. There is none of the bone breaking or bone drilling that came with the jaw distraction.

While I wouldn’t say that we’re looking forward to the palate expansion, we are much more relieved that the proposed solution is non-invasive. Namine isn’t thrilled about it, but she’s not as nervous as she was. (She wasn’t exactly looking forward to having teeth pulled, either.)